Characteristics of the patients
Three hundred and nine cancer patients were potentially eligible for the SCP. Of these, 231 were approached for inclusion. One hundred and one patients declined participation and one withdrew consent. For data analysis, 129 patients were included. By the time of inclusion, 106 (82%) received anti-cancer treatment. Mean age was 70 years (range 38–92) and 81 (63%) were men. One hundred and eleven (86%) had metastatic disease, and 99 (77%) had a Karnofsky performance status of 80% or more . Most common cancer diagnoses were prostate (23%), colorectal (13%), urinary organs except prostate (11%), upper gastrointestinal except pancreas (10%) and pancreas (9%). By the end of follow-up, 23 patients were alive.
Fifteen patients were interviewed regarding their experience with the PHR, six men and nine women. Mean age was 76 years, and all had Eastern Cooperative Oncology Group (ECOG) performance status I or II .
Characteristics of the professionals
In total, 1320 HCPs were identified by their leaders to be exposed to the implementation strategy and received questionnaires, of which 119 (9%) were employed in specialist care. Seventy-six (5.8%) were leaders, 69 (5.2%) physicians, 391 (30%) nurses, and 784 (59%) nurse assistants. Three hundred and fifty-five (of which 318 (87%) were from community care) signed informed consent to participate (response rate 27%). There were 21 drop-outs after the first round and 36 drop-ins after 2.5 years (Table 5). Thirteen percent of the participants from community care worked in Orkdal municipality, the municipality where the hospital was located. To assess adherence to PHR, separate questionnaires were sent to 102 HCPs working with cancer and palliative care in the region.
Altogether 60 HCPs were recruited as informants for semi-structured interviews, of which 43% were employed in specialist care. Fifteen percent were leaders, 35% physicians, 42% nurses, and 8% nurse assistants. Of these, 19 HCPs (10 from specialist care and nine from community care) involved in the development of the SCP underwent semi-structured face-to-face or telephone interviews in the spring of 2014. In the fall of 2015, 21 HCPs (eight from specialist care and 13 from community care) were interviewed face-to face regarding their experience with PHR, and 20 HCPs were interviewed (8 from specialist care and 12 from community care) about the implementation of the SCP.
Evaluation of the intervention
Prior to the implementation of the SCP, HCLs and HCPs identified three factors potentially limiting its success: organizational cultural differences, organizational factors, and decentralized decision-making (Supplementary Material). Organizational cultural differences included different perspectives on care and the purpose of an SCP. Organizational factors, such as different information and communications technology (ICT) systems, might represent a challenge for standardization. A community HCL reflected on this, “Our view of a patient is that the patient is primarily an inhabitant, who lives in the community, lives his life here, and will, independently of if he has cancer or chronic obstructive lung disease or whatever he has, have a good life here, both before and after treatment, and during treatment as well. But in hospital, you have, in a way, from ‘A to Z’ while the patient is admitted. So you don’t in a way see the world outside of the hospital. And then I think you deal with the patent in a different way, that our interaction with the patient is different”. An HCP in the community said it like this regarding the ICT systems, “ I do not see that I will go into St. Olavs Hospitals’ public and look at… click at home death, and then I’m supposed to find it all there. It must be a system in the community. […] It is different if you sit in an office, you know, very different. You have to think about that we’re out in the field large parts of the day.” Ultimately, decentralized decision-making and different priorities in specialist and community care were anticipated to reduce the commitment. As a GP said, “Our municipality has substantially bigger challenges regarding other patient groups. […] It is the municipality itself that has to decide what should be given priority, not specialist care.”
Both hospital and community HCPs acknowledged the SCP as a method to improve palliative cancer care and reported improved quality of care after the implementation. A GP said, “It has improved, it is probably because of the pathway, also for us who live outside of Trondheim, it is because the cancer outpatient clinic is here. Then they manage to implement this pathway much better.” In specialist care, the relevance and perceived fit were related to increased competence and improved structure. In community care, this view was counterbalanced by a worry for decreased attention to other diagnoses and needs for local adaptations. However, personnel in community care endorsed the patient-centered focus on function and individual needs. The workgroup agreed on a common strategy for the development and content of the SCP, and on the suitability both for everyday use and for reaching central goals in palliative care. Furthermore, the SCP was accounted feasible, provided sufficient training in its use. Factors facilitating the practicality included safe admission and discharge routines and patient involvement. The use of checklists and instant transfer of medical information were considered important factors for the intervention’s actual fit, whereas incompatible ICT systems were regarded as a challenge.
Fifteen cancer patients were interviewed on their experiences with the PHR. The patients reported limited use and limited benefit of the PHR. They preferred to use systems they were familiar with or did not feel the need to write. A patient said, “You take so good care of me that there is nothing special to follow up, so far”. Still, some patients appreciated the availability of an updated medication list.
Forty-five HCPs responded to a questionnaire regarding their experience with PHR, of which 32 were nurses and 13 nurse assistants (response rate 44%). Sixty-one percent were familiar with the PHR, but only one third took care of patients using it. The PHR use was restricted by a perception of limited benefit and uncertainty regarding accuracy, especially for medication lists.
Two hundred and eighty-seven HCPs (response rate 22%) reported on SCP use 2 months after project start and 152 HCPs (response rate 41%) after 2.5 years (Table 5). Fifty-three (18%) used the SCP at 2 months and 43 (28%) at 2.5 years (p = 0.02). During the same period, data from 325 hospital admissions were registered for the 129 patients. For 158 admissions (49%), relevant medical information was transferred the same day as discharge. At 3 years (in 2017), five out of 13 municipalities reported that they used the SCP nurse checklists.
The SCP was developed without dedicated funding. A task force revised the SCP three times during the study period based on revised guidelines and practices, user feedback, and personal experiences.
Evaluation of the implementation strategy
Interviews with HCLs and HCPs revealed that the implementation strategy was perceived as agreeable and relevant (Supplementary Material). Because of different perspectives, structures, and priorities in hospital and community care, dissimilar components of the implementation strategy were emphasized. Still, understandable relevant information, access to local experts, and SCP-related education were perceived useful. In addition, the informants considered purposeful interaction across levels of care and user involvement important for the feasibility of the implementation strategy. Local facilitators were regarded important for promoting patient safety through smoother transitions between places of care and more predictability for the patient and carer. Finally, the patient-centered focus was considered important for the actual fit of the implementation strategy.
Three major themes contributing to success or failure with the implementation of the SCP emerged from analysis of interviews with HCPs: “competence”, “coordination”, and “patient and carer” (Supplementary Material). HCPs reported increased competence, coordination, and quality of care after the implementation. The network of resource nurses and decentralized education were considered important for the successful dissemination of the SCP. However, the degree of implementation strategy success varied at different locations. Factors related to lack of success were suboptimal competence in palliative care, lack of process ownership, fear of giving one patient group priority, and limited involvement from the management. In addition, restricted funding and lack of an electronic SCP search function hampered the implementation.
Prospectively registered data regarding activities related to the intervention and implementation strategy showed that the implementation strategy was delivered as intended. The invited HCLs and HCPs attended the meetings, and the education program was conducted as planned. The number of participants of the education program was given in Supplementary Material. The majority of the participants were from community care and all municipalities had HCPs attending the education program. GPs from seven of 12 municipalities (the smallest municipality was served by GPs from the neighbor municipality) attended the education program. Thirty-seven process facilitators were recruited, five from hospital and 32 from community care. The SCP was revised yearly, because every 6 months turned out to be too resource demanding.
Two hundred and eighty-seven HCPs reported on training in use of the SCP 2 months after project start and 153 after 2.5 years (Table 5). Response rates were 22% and 41%, respectively. Eighty-three (29%) reported that they were trained in using the SCP at 2 months and 63 (41%) at 2.5 years (p = 0.01). One hundred and eight HCPs (response rate 8.2%) reported on collegial teaching 2 months after project start and 155 (response rate 42%) after 2.5 years. Thirty-four (31%) had performed collegial teaching at two months and 31 (20%) at 2.5 years (p = 0.04). For confidence with opioid treatment, 168 HCPs reported at two months and 95 after 2.5 years (nurse assistants excluded; response rates 37% and 47%, respectively). Seventy-two percent felt confident after 2 months and 85% after 2.5 years, respectively (p = 0.02), and for confidence with end-of-life care, 77% and 84%, respectively (p = 0.06; response rates 22% and 41%). Two hundred and ninety-three HCPs (response rate 22%) reported on use of symptom assessment tools 2 months after project start and 152 (response rate 41%) after 2.5 years. One hundred and forty-six (50%) applied symptom assessment tools at 2 months and 94 (62%) at 2.5 years (p = 0.02, Table 5).
The costs of the implementation strategy included grants for hospital employment of two nurses and one assistant for 12 months and two community care physicians for 19 months. In addition, community care nurses from ten municipalities received job training at the local hospital.